Friday, February 29, 2008

Joe often suggests that we drive home through the country, so I wasn't suprised when we got to Bond Head road that he suggested we get off the 400 and head home via back roads. But then, about twenty minutes later as we were both marvelling at the beauty of the frozen north, the fields of snow, black trees glinting with ice, mini flurries blown by puffs of winter air - he drops the bomb. A conversation begins that could change the whole rest of our lives.

At ten o'clock yesterday morning someone walked up to him and offered to buy our house.

It's not on the market. Yet. But we have been discussing maybe moving to the city in three or four years. I know these are painful discussions for Joe as he loves the house and loves country living - but I've grown increasingly uncomfortable with being in the country. I try not to make decisions that are entirely disability based but this one is - no question. I don't like the isolation imposed by the combination of back roads and my wheelchair. I worry that if something ever happens to Joe, I would be completely lost. And if there was an emergency where Joe needed help, I would be ineffectual. Joe, whose outlook on life is much sunnier than mine, worries about none of these things. He just likes puttering around the house.

So, here we are. A good offer on the house, but a few years before we had planned to move. What do we do? I think I want to take the offer and then quickly work out what happens next. Joe agrees but his voice is hesitant. I know we are both picturing the future differently.

We leave the discussion as, "We need to think about this."

All night I have tried to take disability out of the equation and look at other issues regarding lifestyle. But I can't. My disability determines my lifestyle now and it would be foolish to pretend otherwise. This is a time to be really honest with myself. I want to move because I'm disabled - there, I've said it.

What I need to do, I think, is to make sure that Joe doesn't have to sacrifice his wants, needs and desires for me. I know he has sacrificed to make sure that my life has gone on unimpeded. I am willing to sacrifice that his doesn't either - and if that means worrying in the night about what might happen, so be it.

But sometime, over the next week, we have to make a decision that could alter our lives. A decision that leads to a host of other decisions.

All because, at 10 o'clock yesterday, someone made an offer on a house that wasn't for sale.

Thursday, February 28, 2008

It's cold here. "Government Cold Warning" cold. Yesterday morning I was off to get bloodwork done, it was a fasting test so I wanted to be at the lab first thing. As a diabetic I could feel my blood sugar dropping on the drive to the lab. Joe pulled the wheelchair out of the back of the car and I plopped down in it.

Oh no!

Really, oh no!

My skin, still slightly damp from the shower, froze to the metal. Like a kid licking a frozen rainpipe -- I felt immediately foolish. So, I pressed back thinking that I would be in the building and the chair would be warming soon. All that meant was that more of me froze to more of the chair. Great.

We waited in the line up, 5 other guys my age or older and the two of us. I quipped to Joe that years ago I used to line up to get into a bar and now I'm lining up at labs. The others laughed and we all agreed that aging was a bitch. I moved a bit in my chair and pain radiated from where I'd ripped away from the metal bar - I grimaced and one of the guys asked if I was OK. What was I supposed to say, "Yeah, I'm fine but my ass is frozen to the wheelchair." So I just said I was fine.

The dainty lady at the lab, called out my name and slapped a plastic bottle on the counter saying, "Dave Hingsburger, we need a urine sample." Someone kisses that mouth, I thought, but said, "Um, I've got mine here in my wheelchair bag." I handed it to her and she barely glanced up as she put my pee on the side of the counter. Then I grimaced again, as the freezing seemed to be getting worse. "You alright?"

I realized that I was so cold in the chair that my whole body was reacting. My genitals were in retreat and I'm surprised I didn't sound like Minnie Mouse when I said, "I'm fine, really, I'm fine." By the time we left the wheelchair had warmed up and released it's hold on me. I haven't looked but there's a few inches of skin that feel very tender, I wonder if there's a mark. There's a battle wound that will be interesting to explain.

So, right now my wheelchair is out of the car and in the front room. It looks at me and laughs as I pass by.

Wednesday, February 27, 2008

20 years ago, when I first put together an abuse prevention workshop for people with intellectual disabilities, almost no one came. Getting agencies and parents to register someone with a disability for the training was beyond difficult. I think what made it even more difficult is that care providers are not allowed to attend the workshop, it's for people with disabilities and that's it. "Oh, but he's a behaviour problem," "Oh, he won't be comfortable without me there," "Oh, he won't understand without me there to help explain," I've heard them all. Sometimes, though very rarely, the concern is valid. Most times people do just fine without their 'carer' sitting beside them 'caring'.

20 years ago, when I first put together an abuse prevention workshop for people with intellectual disabilities, we used a very small room. With virtually no-one there, the classes were small and some of the role plays difficult to do. One role play requires 5 participants. Sometimes that meant there was no one to watch the role play. I think what made it even more difficult to get people to attend was the fact that the brochure says clearly that the workshop is about teaching the word 'no' - 'promoting non-compliance,' 'creating more problems for staff,' 'setting them up for failure,' I heard them all. None of that happened. People simply learned to recognize abuse, 'say no' and report. That's the purpose, that's the effect.

20 years ago, when I first put together an abuse prevention workshop for people with intellectual disabilities, I couldn't anticipate that the world would change. Next week, I'm doing one of those workshops up in Orillia, as part of the service offered by the Sexuality Clinic at York Simcoe Behaviour Management Services, and we have standing room only. We've had to turn away more than we've room for. In fact we are adding two more workshops just to deal with the demand. This lights a fire in my heart and warms me. Times have truely, truely changed. People don't fear individuals with disabilities learning assertion - they welcome it. People don't feel the need to be right beside someone and controlling every moment - they easility let go. People see opportunties for someone in care - and take them.

20 years later, I feel encouraged. Beyond belief, feel hopeful. We are all growing and changing. I was going through my notes this morning (I might as well I have to go for blood tests this morning and am not allowed to eat for another few hours) and as I've kept all my notes from over the years, I see how the workshop has grown and changed over those 20 years. How I'm, myself, growing as a teacher, how I'm trusting my audience of people with disabilities more, how I'm allowing them to reach farther than I did all those years ago. Yes, there's hope.

I'm toying with an idea. I'm thinking of allowing Google Ads on Chewing the Fat - they say the ads with be in concert with the content of the blog. I've just got a note from a guy with a disability who wants to promote his new book on 'Fat' ... and, though I want to read it first, I think that's a reasonably good thing to do with the blog.

But I'm uncertain.

May I ask you for your opinions please. How do you feel about ads on blogs? Do you think that this would harm the purpose of 'Chewing the Fat' or do you think it would enhance it? I'm of two minds ... so I could use yours.

Tuesday, February 26, 2008

For the most part I'm content with my life as it goes. I have a good home and a happy relationship - Joe and I have weathered storms together and have come to a peaceable relationship of love and companionship. I couldn't ask for more. My work provides me with purpose and flairs of passionate reaction to both good and ill as I encounter them. I still manage a focus on what matters to me and on where I want to go. In many ways I'm lucky.

Yes, lucky.

I used that word when talking to a stranger in the lobby of the hotel I stayed at this weekend. I was sitting by the luggage as Joe had gone to get the car and bring it around front to gather our belongings. As I was talking about my weekend she said, "It sounds like fun." It had been. I said, "Yeah, I'm a lucky guy." And I meant it. I had had a wonderful time. We'd enjoyed being with Mike and family and we'd had some real quality time on our own. It was a great weekend. But she looked at me, funny like ... and said ...

"You consider yourself (long dramatic pause) LUCKY?"

I didn't know that it was actually possible to speak italic. But it is. And she did.

BAM!! I went to memory. A woman I was working with several years ago was telling me that she had been talking to another woman in the grocery store and had the woman get all flustered when she said that she was lucky to have such a bright and happy child. She only realized later that the woman had been caught off guard when she described herself as being 'lucky' for having a child with Down Syndrome. "What I knew, she couldn't, that my child was a bright and happy child - her view was that Down Syndrome was the worst of luck not the best of luck. It's all perspective," Mom said to me. At the time I understood easily that one could have a kid with a disability and still feel lucky - because it's a kid's temperment that determines the parental journey - not the number of it's genes.

But now the Birkenstock was on my slightly swollen foot.

Lucky and feeling lucky ... what on earth does that have to do with disability? The woman I had spoken too had admitted to me having a horrible weekend in Ottawa. She and her husband had come to have time away, hoping that it would help their failing relationship. It didn't. She was sitting alone in the lobby of a hotel, near checkout time, not knowing where her husband was, not knowing what to do next. And she was feeling sorry for me. She was feeling luckier than me.

(I've learned to speak italic too.)

Life is attitude, man.

I could let bitterness corrupt everything I have. But why? I don't feel bitter. I get angry that people pull me out of my life and into their prejudice by their attitude towards me and my disability - but that's not enough to make me bitter. It's pure selfishness for anyone who is loved to feel bitter. It's pure self centeredness for anyone who doesn't live with hunger or pain to feel bitter. Who do we all think we are?

I wouldn't swap a day in Ottawa, wheelchair or not, with a man that loves me and people that care about me ... for a day spent standing alone in a hotel lobby wondering if I would end up my life alone.

Monday, February 25, 2008

The brochure said nothing. The website said nothing. So I called to find out if the 'Diefenbunker,' Canada's Cold War Museum was wheelchair accessible. After I left a message enquiring, I found a small note on the website saying that the museum is 'not appropriate for those with mobility impairments' ... oh. So when the museum returned my call and I explained that I was in a wheelchair and had not noticed the note on their website (tucked away in a corner as it is) about it's inappropriateness for those with limited mobility. The woman said, "We don't consider those in wheelchairs as HAVING a limited mobility. That note is to warn those who have difficulty making long distances. Our visitors in wheelchairs tend not to have that problem." She then warned me that there were one or two rooms that I would not be able to get into but that the bulk of the museum would be accessible.

So we arrived at the 'Diefenbunker' which is a four story underground bunker that was built during the cold war and meant to house the government in case of nuclear attack. We were there for the 11am guided tour and had a wonderful time. There were several 'lips' that I had to get over to make it down hallways and in rooms but given that I had Joe, Mike and Joseph, to help when needed, we had no problem. The floors were not carpeted so I was able to push myself independantly through almost the whole building.

While I do think they need to change their website to reflect what they mean by 'limited mobility', I'm glad that they saw the wheelchair as something that made people more mobile. It would have been a very difficulty tour for someone with difficulty walking long distances or for standing for long periods. In fact, my wheelchair made me probably the most comfortable of everyone on the site. I could go long distances and sit and rest when listening to the tour guide.

It was a great way to end the visit with Mike and Joseph. We did something together. Something that we all enjoyed and something that we'll all remember. I'll remember Joseph tromping by me as I swung into a room to take a look at a couple of the displays, "The wheelchair makes a lot possible, doesn't it?" he said.

"Yes," I said.

Finally, someone sees that I am not confined by my chair. I'm liberated by it.

Sunday, February 24, 2008

I went along because of the soda counter at the back of Woolworths. They made the best vanilla shakes in the world. Dad promised that we would stop there on the way to his appointment at the hospital. Rarely did we ever do anything where it was just him and me. I've never really known what to say to my father, he's never really known what to say to me - so the ride into Nelson was quiet.

We went to Woolworths, as promised, and I had a shake as my father just wandered through the store. I sat there and watched him and for the first time I saw him as others saw him, as just a man. A quiet man. A gentle man. But just a man. He came to gather me and we went to the hospital. He was getting something injected into his knee. As it turned out later he had been misdiagnosed and the treatment he received that day was exactly the wrong thing to do ... and in about an hour would cause him incredible pain. And in about a year, would cause him a permanent disability.

It started to snow. The road between Nelson and Salmo was a typical British Columbia road, sharp turns, steep drop offs, terrifying hills. Maybe twenty minutes into the drive, my father pulled the car over to the side of the road, bent over hands resting gently on his knee, and cried in pain. He ordered me out of the car and behind the driver's wheel. He slid over to the passenger side and told me that I'd have to drive back to Salmo.

I had never even sat in the driver side of the car. Fear welled up in me. They called me 'sissy' for a reason, I was not full of adventure and was easily spooked and frightened. I looked at him imploringly. "You can do it, you have to drive."

He explained to me about the various pedals I'd have to push and then told me to just steer the car. Miraculously, I pulled onto the road smoothly. I don't think I drove over 20 miles an hour the whole way back. I know I didn't say a word - who can talk with a heart beating where the voice box should be. I managed to get us back to the house and pull the car into the drive way. By then my dad had passed out with the pain.

But he went to work the next day. Limping and wincing, he went to work. Because that's what men did, they grimaced and went about their day. Only months later he would need an operation that would 'cure' the problem but leave him with a permanent limp and the inability to walk long distances. But I never saw him as having a disability.

Becuase he just grimaced and went on doing what he was supposed to do. He was a husband and a father and he provided. That's what he did. He did it well. I never once heard him complain about his disability, talk about it in any real way, so to all intense and purpose it didn't exist. Not that he was a 'disability denier' just that he was called to do something else, something that required him to be more than just a man - to be a husband and a father.

God knows life at home was as violent for him as for the two boys he raised, but he just grimaced and went on. He provided. That's what he did. That was his ethic.

That's what he passed on to me.

For the longest time I didn't appreciate the gift. But this weekend, having taken work home with me to do, and doing it sitting in Ottawa in the early morning- because that's what I'm called to do - I realized it was a much bigger gift that I ever imagined.

I thought this story was about the first time I drove a car.

But it's not.

It's about the first time I understood selflessness.

I was 52 when I first sat in this wheelchair, but the attitude I'd need to survive the transition was borne years and years ago.

Saturday, February 23, 2008

OK, walking is difficult and when I have to do it, I'm afraid of falling.

OK, I thought THIS was my disability.

Wrong.

Yesterday after work we were on our way to Ottawa to visit Mike, Merrissa and baby Ruby in their new digs there. We stopped in Belleville to pick up Joseph, Mike's number one son, to bring him along for the ride. Joseph is 13 now and we've known him since he was about 6. It's been great watching him grow up, primarily because he's an awesome kid with a character that just won't quit.

After the preliminary hello's we set into the journey. Joesph called his dad on my cell to let him know that we were formally on our way and after he hung up I joked with him about his one word teenage answers to questions. I introduced him to a word, one that he's probably not learned in school ... 'sentence'. And then, he was off ...

In a two hour car ride we heard about:

one video game we've never heard of - and something about blue tooth that we didn't understand

three television programmes that were completely unknown to us but one involved a guy in a wheelchair who manages to be a crazed killer at the same time

four snowboarding terms that while we could put the syllables together we had no grasp of the meaning

Then Joseph decided to quiz us with questions from cell biology that he's learning in science - I'm afraid we were even stupider than he might have thought - I guessed that the word endoplasmic had something to do with the fuel they used on the Starship Enterpise and the sad thing was I wasn't kidding. Finally, God be praised, he tried a history question and Joe nailed that one. And for me, he tried a linguistic trick which I explained was a tautology and then introduced him to the 'prime tautology' and explained how one of the first was noted in the Bible. Finding this little fun, Joseph was back on other topics involving ...

two robot toys

three different gaming systems (who knew?)

how the WE (?) game works

So, here's what I got out of the trip. The wheelchair isn't the cause of my disability. Being over 14 is ... after Mike picked up Joseph I looked at Joe and asked. "How much of that did you understand?" Joe shook his head and said, "I need to lie down."

Friday, February 22, 2008

He'd glance up and check. He was looking for 'the look'. I knew instantly what he was expecting - that little smile, half sad, half pity, wholely unwelcome. He looked over at me and caught me watching. He pursed his lips, then nodded acknowledgement. We were in Walmart, I hate to admit that - I tried, I really tried, to avoid Walmart, but it's so 'just there'. Anyways, we were in Walmart when I saw him. He was shopping, I'd guess with a staff. Shopping meaning he was following behind her in her wake, she talking on the cell phone so loudly that everyone knew that she was pissed at her sister, unless he was a cross dresser who was a couple sizes larger, I'd guess the blouse she was looking at was more her taste. Don't staff know that they can be seen in public? He served as a means for her to get out and meet her needs - he was entirely disengaged with the 'outing' and throughly engaged with the regular 'outing' that he got when others noticed his, ahem, difference.

Did I do anything or say anything? Nope, not to her. Wait, you'll see.

I did pull up beside him as he stood and waited while she selected a new bra. I kid you not. Again he was glancing around, checking out to see who was noticing him, staring at him. "Come here often?" I said. He surprised me by laughing, "That's funny," he said getting it. "Do you get stared at too?" I asked a question knowing the answer. "Yeah, you too?" "Yeah." "Why do they do that," he asked. "We're different, we catch their eye." "Do you think that's it?" "Most of the time, look at that rack of clothes, there." He nodded. "OK now which do you notice? "The yellow one, it sticks out from the others." "Well, it's the same for us most of the time." "We're bright yellow, they are kind of ..." "Plain," he said and laughed. "Sometimes it's mean, sometimes it's staring, but mostly it's just noticing the yellow one, I think."

We then played a game. We guessed when people walked by who would notice and who would stare. Since we comprised a wheelchair guy and a Down Syndrome guy - 'staring' outnumbered the 'noticing' but he got the difference. Finally the staff came out of the sea of women's clothing with a bra (how wildly inappropriate is that) in her hand along with some other items. She saw the two of us together and at first glared at him, "Patrick, what have I told you about talking to ...."

She went white and looked at me hard. "You are Dave Hingsburger, right?"

I nodded.

She went all flustery. "I was just getting some stuff, I mean I thought since I was out, usually I don't, really I don't. Pat, tell Dave that when we go out I don't usually shop for myself, it's just that they had a sale on and I really needed some things."

Patrick came over and asked if I'd like to meet up again when he's going out. I gave him my number and told him that I'd love to meet for tea. She was putting things in the cart, settling down a bit. But Pat wasn't done, "If she doesn't have to do any shopping, we should be able to go." She looked up, seeing she was being kidded.

"Dave Hingsburger wouldn't you just frigging know it."

I laughed.

"I'm going to be in your blog?"

"This week, yes."

"Shit."

But the cool thing is, Pat did call, we are getting together for tea next week.

Thursday, February 21, 2008

It was nearing lunch time, the server went down, what the heck. I put my bag on the back of my wheelchair and went out to heat up lunch in the microwave. I haven't had a hot lunch at work for months and months. Having lost the ability to stand for any length of time without getting virtigo and the feeling of panic that results from the certainty that I'm going to fall over, made me very hesitant to try anything that could result in a loud thud as flab hits concrete. So, it's been cold lunches at my desk.

But since I resolved just to 'be' disabled I hopped in the chair and headed down to the kitchen. On the way there I was thinking about the interview I read a few months back where a reporter was talking to Stevie Wonder about a new record. Or at least Stevie was trying to get the reporter onto the subject of his new record. The reporter got stuck on Stevie being blind and kept asking all sorts of wierd questions about being a 'blind musician', you know a 'blind piano player' and a 'blind singer'. You could tell from his responses, patient at first, that he was growing tired of too much 'blind' and not enough 'music'. Finally, he broke when she asked, 'What advice would you give someone who is blind?" His response, paraphrasing here, don't have the exact quote at hand, "Be blind, just be blind, that's what you are, so be blind."

I remember being struck by the profundity of that remark. Even though he spoke in frustration, I thought it was a brilliant bit of advice. Even though, as I was reading it, I was refusing to 'Be disabled, that's what I am, so be disabled.' I was still refusing to use my chair at work. But now, I'm on my to have a hot lunch.

I got to the lunchroom and the chair zooms around well, though I had to move a couple things that were in the way. But I put on a couple frozen burrittos and sat and waited. A few seconds later two women from the administration part of the office came in and suddenly we were chatting about the new character on the Young and the Restless (Victor's son by Hope) and just generally jawing. It was nice.

Lunch heated, I put it in my bag along with a plate and a fork, I was on my way back. I parked my chair in my office and sat down at my desk. Just then someone popped into my office wanting to talk about something quickly before she had to leave. We talked for 15 to 20 minutes and she thanked me for my time and headed out.

I pulled my lunch from the back and plopped it on my desk. It had gone cold. Well, cool. Oh, well, a hot lunch TOMORROW. Because, I got the chair. And ...

I'm gonna be disabled, because that's what I am, so I'm gonna be disabled.

Wednesday, February 20, 2008

They didn't know what was wrong but they were worried. Their son had become remote and uncommunicative. "He's just not himself."

Describing their son in words typical to parents of kids with Down Syndrome, "He's normally a happy, loving kid. We hadn't expected him to go through a teenage rebellion period but, what the heck, he's allowed. Then we realized that this is something different. Something darker. We're worried about him."

The 15 year old boy was just as his parents described. He didn't seem troubled, he seemed burdened. He glanced over at me and it was as if he was looking at me from a long way off, not as if we were in a room together. But he was curious. He became present in his eyes. "How long you been in a wheelchair?"

Somehow, I knew my answer mattered. I didn't want to lie, but I really didn't want to tell the truth either. Right now I wanted to identify with the chair. "A long time now," well three years is a long time. "What is it like?"

Truth. "I'm fine with it, others aren't so good."

"What do you mean?"

"Oh, you know, staring, laughing, a bit of bullying ... that kind of stuff."

"Huh," a non-committal sound. I thought I'd hit the mark and his sound let me know I'd missed. Damn that was my best play.

"So how long you been ...."

"Down Syndrome? I was borne ..."

"No, I know that," I didn't want him to think I was stupid, "how long you been upset like this?"

"Since the show," he said and made a face like he slipped.

It took a little while but he gave in, I think primarily because he'd been upset for too long. He was tired of it all. He told me that he had been home watching television and he switched to a show that was about Down Syndrome. he said that they were talking about a 'cure' for Down Syndrome and he realized later that 'cure' meant 'elimination'. That most parents choose to not have a child with Down Syndrome. That there was a future without Down Syndrome in it. He was devastated.

For weeks he's worried about it. About his friends with Down Syndrome. About his parents, did they have the test? Would they have gotten rid of him if they had the chance? He was scared to ask them. Scared about what their answer might have been. After all this, told to me in tone of upset and defiance even, ended in tears. He was afraid that he had slipped by the tests, that he wasn't really wanted. He now understood exactly where he stood in the world.

With his permission, I told his parents about what was going on. I let them know that in this case, my wheelchair made the difference. He could talk to me because the wheelchair made me different enough to trust. When they heard, they blanched and then they cried. Both of them. We now talked and they said that they didn't know what to tell him. They love him. They want him as their son. But in truth, they didn't know that the baby would have Down Syndrome, and they don't know what they would have done. They couldn't tell him that they wouldn't have had an abortion, they may have. But that was before they met him. Fell in love with him. They looked at me pleadingly, as if I could give them magic answers.

I suggested keeping the discussion in the present. "He's worried about the present. He wants to know if you would have aborted him. Well, the answer is no. You've met him, you love him, you want him. Tell him that. He'll know it's the truth."

"What if he asks ..."

"Don't lie to him!" I surprised myself with the strength of my emotion, "If he begins to ask bigger questions. Give him bigger answers. Just don't lie. He can stand the truth, he'll be devastated by a lie."

They called me later that day. He didn't ask the bigger question. He seemed, they said, more settled and more like his old self.

"But," mom said, "we are changed. He only has to live with difference, we have to live with the bigger question. He knows who he is. He's lucky, we have to guess at who we are, who we would have been under other circumstances."

"I told her that I've learned, over the years, that life keeps asking us who we are and who we will be. I don't have a kid with Down Syndrome, but I get asked that question all the time. Growth doesn't stop at the teen years."

Tuesday, February 19, 2008

It took me by shock this morning. Signing on to do my daily post has become routine and as such I don't really look at what's happening on the computer screen. But, feeling a bit zoned out from the travel and getting used to being at home, today I was actually reading the screen. I noticed that today I will be writing my 500th blog post.

500

That's a lot of posts.

I remember when I started writing this blog I had intended to write for only a year. But the year passed and I continued writing, the habit being hard to break. I wanted to write a blog for several reasons, primarily I wanted to document, somewhere, thoughts and ideas about having a disability, working in the field of disability, living the life given to me. At first I wrote blogs that were aimed at being more 'educational' and 'instructive' ... like I was telling stories at a lecture, stories with a point. But that grew tired for me, and after a while I began just writing about what I saw and felt. The little stories that happen around me, the reactions that happen within me, the thoughts that occasionally occur as a result.

Joe and I have never been into photography, we have virtually no pictures of our life together. Some of our friends have more pictures of us that we have of ourselves. Over the years, we've talked about how we, as we get older, might regret that. Well, we're getting older and the regret hasn't happened yet. I think we rely on stories, the stories we've experienced together, as the primary source of our memories.

After reading the story I wrote about the couple having breakfast in Kamloops, Joe said, "This blog has become like our family photo album, hasn't it?"

And it kind of has.

Sometimes, I look over the blog and am transported to various places that we've travelled. Our trips to England are well documented and the stories bring back images to my mind. Our trip to Nova Scotia is there for all to see. Were we go, the experiences appear here on this blog.

Sometimes, I read entries and can't believe that I've written what I've written for the world to see. It's like I forget that this is a public diary - and glimpses of inner life are laid bare for all to see. But then I realize that the sky hasn't fallen in, it's all OK.

Sometimes, I read old posts and see that the role of disability in my life has been an informative one. I began this blog as someone with a new disability. Someone who had just recently sat down in a wheelchair. The change from a new identity as as person with a disability to an established identity of a disabled person, has been subtle but dramatic.

Monday, February 18, 2008

I was 'tagged' a few days ago by FridaWrites ... this 'tag' invites me to share about the books that are around me. The instructions:-look up page 123 in the nearest book-look for the fifth sentence-then post the three sentences that follow that fifth sentence on page 123. Now, the book I am reading, "How Long Has This Been Going On?" by Ethan Mordden isn't the book that's closest. I brought "Benighted" by Kit Whitfield along with me on the trip and it's physically closer. So, to follow the rules exactly I will quote from it.

It's quiet as a moon night in here. "I'm sorry," I say, "Your throat will heal up, and you'll be okay. You'll just have a few scars."

Now, Benighted isn't the kind of book that I normally read. I bought it when out with Cousin Christine in Toronto. We had gone to the book store because I wanted her to have a copy of "Good Omens' - the clerk there overheard us and came over and enthused about books with us for awhile. She recommended Benighted, a book about a world of werewolves as an excellent read but also because of it's subtext about diversity, difference and power. She actually seemed to understand about the nature of disability and how it fits into a societal power system. So, I bought the book. (This is why stores should hire staff with a passion for what they do ... they sell unlikely things to unlikely customers.)

The book I'm reading, a gay epic, had it been closest ... would have had the following quote:

"Pack up! It's enough! Do you hear me?"

But it too, isn't my typical type of fiction. I bought it on a visit to Little Sisters, a gay bookstore in Vancouver. The reviews on the back interested me. I typically read either murder mysteries or historical fiction - when I can't find disability literature (the Matthew Shardlake books for example) anywhere. I love books and I love good writing. Having someone spin me a yarn is a wonderful experience. I admire writers who can inform me, inspire me, entertain me. It is such a gift to be able to write fiction that challenges and changes. The book I just finished, "Q" by Luther Bissett about the Reformation and Martin Luther and the formation of the Anabaptists - a 800 page romp through the history of Europe, is more typical of my reads. I also read a fair bit of non fiction too, almost all disability related. I have "Danny: Murder of a Man With Down Syndrome" waiting on my desk. But it's too soon after Brent Martin to even think of picking the book up.

Now, I'm supposed to tag others. I don't like this part. I like to leave it open and tag everyone who wants to be tagged. If you participate - then please - leave a link in the comment section and I'll pop over and visit. I am going to purposely tag Shannon, niece extraordinaire, because I just love her book reviews ... so Shannon, you're it. Remember ... follow the rules - the closest book.

Now this tagged thing has me a bit interested in starting one of my own. I've got an idea for one and I'll fine tune it and spring it on you sometime next week.

Sunday, February 17, 2008

Driving down through Rossland on the way to Trail in the deepest of winter is an experience worth having. The road drops at angles that are dizzying and almost every corner has a 'runaway lane' for trucks to use when the brakes fail. We had a day off before lecturing in Castlegar so we decided to take a day trip around the area where I grew up. While most in Salmo seemed to prefer Nelson as a place to shop on Saturdays, my parents preferred Trail. Every Friday night we went to bed knowing that the morning would be the weekly visit to the city to get groceries and my brother and I would spend our allowance.

We'd park near the grocery store and then we'd all head our separate ways. My brother always started by going to the record store and check out various 45's that were on the 'hit parade' that week. I would sneak away and walk a few blocks to a book store. It was my private discovery. They had several things that attracted me. A wall of magazines. A wall of books. But the best thing there were the owners. A wonderful couple. Their store was warm with welcome and cheery with laughter. They loved books, they loved those who loved books and they were genuine in their manner.

It didn't take long for them to notice the young fat boy who came every Saturday and loitered around, drinking in the atmosphere, smiling at their jokes with others. They asked me my name and then welcomed me every Saturday, by name. I came to really look forward to my few minutes there every week. It seemed like safe harbour. I knew nothing of them - only that they were Christian, that they were parents, that they loved books.

I met their son a couple of times and managed to do so without staring. He was the first child I ever saw with Down Syndrome. There were no kids like that at our school, in our neighbourhood, in our social world. He was there on the occasional Saturday and I remembered him playing in a small area behind the counter. I saw them with him and wondered at the love that poured out towards that kid. I wondered then if this child is what made them different. Made their hearts wider. Made them capable of gentleness with strangers.

One day I was in the store and I heard a gasp and turned and saw the owner pick a purse up from the floor by the register. She looked at me quickly and said, "Can you watch my son for me? I'll just be a second." I nodded and she ran out of the store after the purse's owner. I looked at the little boy who looked at me. He smiled. So did I.

"Your mom will be right back," I said.

He nodded, gravely.

I stood looking out the window, not knowing what to say. He came and stood beside me and took my hand. Together we stood there waiting for his mother to return.

Saturday, February 16, 2008

He's so very little. And yet he is aware of so much. Too much. He lives in a land controled by tyrants who hurt him because they can. There is no respite. I wish I could comfort him. I wish I could let him know that it'll be ... he'll be OK. But I can't. He's too far away from my arms for me to hold. Too far away to hear my voice. He just feels alone. He isn't. I'm here. But he doesn't know that.

Look, there's the school. It's so small. But to him, it's a big building. It's taken on life. Look carefully you can see it's breath in the cold. Inside are those who would torment him, torture him, exclude him, avoid him, knock him into lockers, mock him, make his day so fear filled that learning is impossible. They who walk the hall lie to him, they give him subtle messages that they will have power over him for his whole life. That they will rule his days and nights, forever. That there is no escape. It's here that he first thinks that dieing would be a relief. And I want to comfort him. I want to let him know that they are bullies and that bullies lie. Bullies don't control time. And bullies can't predict the future. But he can't hear me. I can see him, right in front of me, but I can't scream loud enough for him to hear.

And there, there's his house. This is no respite from the storm of school. No place of acceptance. This is a place that the weather station fears - the tempests here are too violent, too unpredictable, the damage too great. Here, he's just a boy, but he walks on eggshells. Never wanting to cause the offense that sets off the violence. He makes it to his room and he cries. Relief bring tears, fears bring more. He's lost. He's alone. And I can't talk to him. I'm sitting on the bed next to him and I can't talk to him. Can't reassure him that he will grow out of this place. That he will survive this. That he needs just to keep on going, the path he's on will take him far, far away from all this. But he sees no path, he sees no end.

"Are you ready to go back to the hotel?"

"Yes."

We pull out of town. I had wanted to go back to my home town while in the area. The town that I grew up in. The town that holds my childhood. We drive through the few streets of a very small town. I point out various landmarks of memory to Joe. But the memories that crowd my mind are of the aloneness and fear experienced by a boy who knew abuse at home and bullying at school. A boy who had no idea that he would travel far away from this place.

Friday, February 15, 2008

Guess what I like about being disabled, specifically being in a wheelchair. This is not an odd question, there are good things, upsides, to everything. Being in the wheelchair definately has some up sides so, go on guess ...

Did you guess, parking?

Well, yeah, but what's even better than parking is sitting in the wheelchair waiting to get in the car while the illegal parkers slink by in shame.

Did you guess, early boarding on airplanes?

Well, yeah, but that's primarily so that we get first dibs on the overhead baggage compartment.

Did you guess, the simpering smiles that strangers pass along when they see me in the mall?

Well, actually, no - but thanks for trying.

Someone yesterday suggested that it must be good to be in a wheelchair because I can grab anyone's body anywhere and then just smile simply at them like I didn't understand. It was a woman who suggested this ... you know who you are.

What I really, really like about being in a wheelchair is I now have a 'wheelchair bag' that hangs on the back of my chair. Wow. Now, I'm a man. I have pockets and a wallet and that's it. I never got into 'man bags' or satchels or any of that stuff. I grew up in a small town in the Rockies - men were men, inside and out. But now, I have a wheelchair bag. It's so distant from anything resembling a purse that I don't have to feel that I'm shaking social convention. I don't know how I managed for 52 years without one. I've got everything I need in there.

Like ...

three different kinds of tea, white, green and oo long - not every restaurant has the options I prefer

my diabetes blood tester

a couple of juices should my blood ever be low

several pens

a condom - some find disabled fat guys hot - be prepared

the telephone

the section of the newspaper with the crossword in it (this is for Joe)

a thermos

a cattle prod - you need to some way of repulsing those who want to lay hands on and pray

an extra pair of dollar store glasses

change for parking meters and for street musicians

a can of diet coke (this is, again, for Joe)

a couple of dog treats for dogs that we run into on the street

Wow, huh? All these years of coping with being without is over. If I need it, want it or worry about not having it, it pops into the wheelchair bag. Ah, I can feel the growing envy of you two footers out there who have to fit everything thing into pockets or small purses ... not me, I've got a big old cloth grocery bay hanging off the back of my chair lugging all that I will need.

So, to heck with the frustrations of curbs and sidewalks in winter. I've got a wheelie bag! All will be well.

Thursday, February 14, 2008

It was probably twenty years ago now. I had come into the office and was told that there was a man with a disability waiting to see me in the interview room. I had no appointments that morning so I peeked in to see who was there. I didn't know him, he was a man in his late thirties sitting quietly, looking very serious with his hands twisting something in his lap. I dropped my briefcase in my office and went to see what this was all about.

He addressed me by name when I entered the room, he told me that he often saw me coming to the sheltered industry where he worked and that one of his friends was seeing me about 'sex stuff'. I asked him how he came to be in the office this morning. He told me that instead of taking the bus he had walked on over to the hospital where our offices were. It took a second to figure out that he hadn't told anyone what he had done, didn't want me to call and tell them where he was even though he knew others would be looking for him. He said he'd go straight back to the day programme when he was done but that he didn't want them to know he was here, didn't want them asking why he had come to talk to me.

OK. But I need to say it was a harder decision than you might imagine to not call and inform everyone where he was and that he was safe. But I didn't call.

In my heart I knew that this was going to be about sex. But I was wrong. Quite wrong. It took him a while to work up the courage to ask me his question. A question that he had carried for a very long time. A question that was waking him up in the night. And finally he asked.

"Is it OK for me to love?"

I didn't get it. I started talking without thinking first, a habit I've yet to break, about consent and about time and place. He looked at me so intently, I stopped.

"I'm not talking about sex."

"No."

"OK, what then?"

"Is it OK for me to love?"

I am thinking now. And there is a long pause before I answer. The agency he lives in has a 'no sex, no relationships' policy. Once I knew his name I remembered being told about him by staff at the day programme, they'd had to separate him from a woman because both sets of parents, his and hers, had demanded that the relationship be stopped and they be separated. In a world where he would be punished at home and harrassed by parents for simply falling in love ... the answer 'Yes' seemed somehow both right and wrong.

I looked up at him and he stared at me. Waiting. He was very serious about his question. He wasn't there making a political statement about oppression, he simply wanted to know if it was OK for him to love. If for him loving was wrong. I had faced this question myself. In a world of intolerance and bias, I had to determine if the heart in my chest had been wrongly placed. It had been a difficult time for me, I knew that this was a difficult time for him.

So I said, "Yes." What else could I say? He'd asked about love. About something sacred. About the essence of what it was to be human. I couldn't deny him this answer simply because he lived in an agency wherein love was persecuted, simply because his family would rise in anger at his desire. What kind of person would that have made me? Claiming love, against all odds for me and now denying it to another. So I said 'Yes.'

It didn't end there.

I said, "Yes, but ..."

... the ageny may punish you.

... your parents may not support you.

But, it's not only OK for you to love, it's wonderful that you do so.

We talked awhile longer and I offered him a drive back to the day programme. He accepted and we drove together. He cried a little bit in the car and I said nothing and felt his gratefulness that I didn't pry. He thanked me when he got out of the car and walked into the workplace.

No one there ever asked me about that day, so no one must have seen me drop him off. He smiled when I saw him there and I always waved.

Two years later, I assisted that agency draft a new policy regarding sexuality and relationships. They had a desire to change practice and they did. I went to see him to tell him about the new policy and found that his family had withdrawn him from service when the new policy came into place. They didn't want him living somewhere that might allow him to be in relationship.

My heart broke.

It is Valentines day today. If you are a staff working in an agency at any level - from direct care to executive director or CEO - ask yourself what love means to you. Ask yourself what would happen to someone in your care if they fell in love and wanted to marry. If your agency would not support ... love ... then do something. Send an email up to a manager or supervisor asking 'why' about the policy. Suggest it's time to rethink who you are as an agency. If you are a parent of a child with a disability - a young child - look at your child forever differently. Forget all those things you've been told about your child never growing up. Your child will one day fall in love. It will happen. Begin to prepare your child for a life of loving. Don't take it out of the equation. If you are the parent of an older child - and you've been hesitant to think of your child as a loving being. Realize that they are competent in loving you ... and get the message.

I will not eat a chocolate heart today.

I do not celebrate Valentine's day.

Joe and I, long ago, realized that we - every day - lived in a world that denied our feelings. And as such we had to affirm them to ourselves and others every day that love existed between us. That without the approval of family or society, we loved, every day. Valentine's day was redundant. We didn't need it then, we don't need it now.

But other's do. Not as a celebration of love. But as a call to arms ...

Wednesday, February 13, 2008

It seems that hotels don't think that disabled people look out windows. The disabled rooms almost always have the worst views. Maybe they think we don't appreciate scenery. Maybe they think the struggle to the window is just too much for our little crippled legs. Maybe they think that an inspiring view would depress a bitter soul. I don't know why, but our rooms look over the ass end of the hotel.

That's why it was a shock yesterday to check into the Prestige Hotel in Salmon Arm yesterday. The hotel sits right on Lake Shuswap, it's a beautiful location. Joe noticed first saying, "Oh my God, we're going to over look the lake!" I got immediately what he said as we both had often talked about how, now me being in a wheelchair, we get the lousy views. We openned the door and my oh my. We looked over a frozen lake, the mist hung over the ice and sometimes the wind blew fingers of mist out over the lake like a dead hand searching for warmth. We kept the window open right through the darkening of the evening.

If there is every any doubt about institutional disphobia just compare view from your room and the view from mine.

Tuesday, February 12, 2008

People learn to cope with the world in different ways. Some healthy, some not. I have a friend who whenever life gets to much he leaves his family for the company of drugs and alcohol. He's never been able to develop a good coping mechanism. I was thinking of him yesterday when teaching a class of people with disabilities in Kamloops about relationships. Some folks had travelled to the session from Salmon Arm but most were from the local area.

I didn't recognize her at first, though I've met her several times. I understood why she looked so different when she came up to me at lunch and said, "Want to hear a funny story?" I nodded and she talked about being at the beach this summer and the wind catching her wig and throwing it into the water. She bent over in laughter. Then I recognized her, I pictured her in her wig. Today she was completely bald. Not a hair on her head, no eyebrows, nothing. I asked her, if she wouldn't mind, telling me how she came to lose her hair. She said that something had happened in her childhood and her hair just leapt off her head.

She made quite a sight, easy to pick out in a crowd. I could only imagine the kind of stares and comments that others made. But she bore herself well in the world, walked with confidence, bald head high. I came to understand why in the afternoon.

We had pairs together talking, each had to find out what the other's favourite flavour of cake, what they wanted for their birthday and what the first thing they would buy if they won the lottery. We laughed a lot as people came forward with little facts about each other. Learning to have a social conversation that isn't about 'you' is an important social skill. And they were 'getting it'.

When we got to her pair, she couldn't let the other person answer, it was like she was waiting. "What do you want for your birthday?" "Shampoo!" she yelled out. "What would you spend the lottery on, "Blow dryers!" came her answer and we all dissolved into laughter. Throughout the day she used her humour well. Sometimes she targetted herself and the bald head, sometimes me and the little mistakes I made through the day, sometimes - gently - others.

No wonder she holds her (bald) head high. She laughs at the world before the world can laugh at her.

Monday, February 11, 2008

What with our suitcase of laundry emitting fumes that could kill a cat, we decided to take advantage of being in a hotel with coin operated washers and dryers to get the clothes done before we headed into town. We know ourselves and we are both types that can get distracted and end up putting things off. Given that the plastic was beginning to melt on the luggage handle, we thought that we reallycouldn't wait. So, I had a couple scoops of left over Indian food that we had ordered the night before and settled on the bed to read until all was clean again.

It took just over an hour, Joe burst through the door with clean clothes in tow and we began getting ready to head out to get breakfast. The hotel offers 'continental breakfast' ... I've never understood which continent they are referring to because a breakfast full of sugar isn't the way to start the day.

The first restaurante we went to had a twenty minute line up. Don't Kamloopians eat at home? Then we found one that was a little more upscale than we typically go, but there was no line up. We were guided to a table over by the window and I managed to tuck my wheelchair in and out of the way. I don't like feeling in the way. I watched as a few seconds later an elderly couple, her in a walker, him with a cane, made their way to a table a couple over. They were clearly poor, he had a coat that was ripped at the pocket and repaired, roughly, with duct tape. She wore a sweater that was clean, but whose beauty had faded with time.

As we were looking at the menu a gaggle of girls came in and asked to sit somewhere other than 'cripple row'. I glanced at them with menace, they were a little too self absorbed to notice. But the waitress shooed them off to the far corner of the restaurant, and we returned to peace. I looked over to see if the other couple noticed the interchange. They didn't. They were too busy noticing each other. They hadn't picked up the menu, instead, he had picked up her hand and was gently holding it.

We placed our order, and went a bit extravagent, deciding on vegetarian Eggs Benedict and specialty teas. We seldom splurge on breakfast like this, but I figured I worked Saturday and have only one day off this weekend, I deserve to pamper myself. I heard the waitress take their order but didn't hear what it was, and indeed was losing interest in others as Joe and I picked up on a conversation we've been having on and off for this whole trip. Something we need to talk about and something we have to figure out. Not a subject of stress but a subject not to be put off either.

When our food arrived, we paused in conversation, and in that pause I noticed the elderly couple having their food delivered too. He got a plate with two eggs, two toast and two slices of bacon. She got a cup of coffee. They thanked the waitress and as soon as she was gone, the work began. He took the toast off the side plate and cut the eggs down the middle. He slid an egg over to the side plate and then placed on it a slice of toast and a slice of bacon. He slid the meal over to her. They looked at each other conspiatorially and giggled.

Then.

They joined hands, bowed their heads and said grace. I heard the word 'bounty'.

Bounty was what was on my plate. Food that I had tucked into, food that I had lost the capacity to feel grateful for. Food that may well, one day, be richer that I am. In the moment, I felt shamed. Losing the ability to be grateful and graceful about what one has is the first step to callousness and arrogence. I don't want to loose the wonder of what I have been given, the opportunities that are presented to me, the stuff that comes as a result.

I'm not sure how, but over the next few days, I'm inviting grace back into my life. An elderly couple treasures what they have, in each other, and in what is brought to the table.

Sunday, February 10, 2008

One word and I was thrilled. It took him a long time, and I waited. His lips quivered for what seemed like forever and then he spoke. A deep voice. A voice rarely used. "Chocolate." The question had been, "What makes you happy." Others in the group had willingly and eagerly answered the question. I saw him looking at me, his eyes bright, I knew he wanted to answer.

About 15 people with disabilities had gathered to chat with me about rights, about life, about getting on in the world. It was a bit more general than what I typically do - so it was more fun, more directed by the group, less need to rush through an established curriculum. More time to listen to someone who's eyes say 'pick me'.

I went to him to ask what made him happy. A few called out that he couldn't speak. But my heart knew. Just knew, that he had something to say. He said only one word in response to the question about happiness, "Chocolate." There was victory in his face when the word came out. A smile slowly spread, transforming his face the way icing transforms a cake.

He had been sitting quietly the whole day. He came in with the assistance of a staff who gently found him a chair and with real care wished him a good time. With his placid face and rounded shoulders, he looked like he was used to a life of waiting and watching. But his eyes gave his secret away, there was someone home in there.

The next thing we talked about, in our review of emotions was 'sad' - "What are some things that make you sad?" Again, others more eager, those more able, were quick to call out thing that had caused them hurt. I glanced over at him. Again, I knew. I looked straight at him and said his name, his eyes which hadn't left mine, blinked acknowledgement, "What makes you sad?"

Again lips trembled and words formed with difficulty somewhere deep inside him, but this time he spoke more than a word, he spoke a sentence, an idea, his history, "Teasing and hurting makes me sad." His jaw was set. It was like he had waited a lifetime to say this. To make a statement about the world and what it had done to him. To point an accusing finger at those who had hurt him.

The room fell, suddenly, silent. Every person in that room had heard his voice. Every person knew what he was talking about. He had broken silence. Not simply the silence of one, but the silence of many. To those who would glance at him, he who sits in the manner of the deeply disabled, they might miss the person who lives within him, the being behind the eyes, but not today. Today he wanted to be with us, part of us, and he wanted to tell the truth.

At the end of the day, I told him that I still had a day of training to do with staff and parents. I told him that because of what he said I would change what I had planned and talk to them about teasing and bullying. I asked him if I could write about what he said, share what he had told me, he said, 'Yes.'

I know that people with disabilities are teased and brutalized. I know that teasing is often violent and always hurtful. But as I watched him slowly walk out of the room, I wondered about the depravity of those who would pick this man to be their victim. I wondered about the need some have to establish rank by violence. I wondered at a world that can't agree ... at least ... to care, a little, for someone who asks, and asks quietly, for chocolate.

Saturday, February 09, 2008

I got it, a day late. Too late to make a difference. But I got it. On our first day in 100 Mile House we went shopping at the local Safeway store to pick up some pop and snacks for the room. Also to kill time and just hang out. As I wrote yesterday, this is a nice town, people treated me no diffierently than I used to be treated before I ended up in a chair. So I was quite enjoying rolling around shopping.

On our way out of the store we decided to go back into the mall up to a small coffee shop named Tatanka for a cup of tea and a bite to eat. When you leave Safeway there is a small ramp up back into the mall itself. It's a bit too steep for me on my own, so Joe told me to wander around the store until he got rid of the groceries and then he would come back and help me get up the ramp.

I was pushing by a narrow space and I found an elderly woman behind me. I wanted to get out of the way of her and her cart so I began pushing quickly. She told me to slow down and that she wasn't in a hurry, then she started chatting about the weather. I answer her, a bit breathlessly because I'm trying to get my boat out of the passage. I manage to let her by but only a few minutes later she is back, behind me again, at the magazine rack by the door. Again, I'm trying to move and trying to figure out the path that she took to get behind me again.

Now she's telling me to slow down again and is asking where I'm from. I'm answering but I'm also pushing myself out of the way. As a fat kid who always felt in the way, this keys into an ancient anxiety of mine, and I just have to get out of the way. I manage, again, to clear the way for her. She gives me a smile, one that has a message, and then heads out of the store.

Last night, I sat up in bed, 'She was just lonely, she just wanted to talk. I was just hanging around, she thought she'd share some time with me.' I was thankful that while being oblivious to her need I wasn't rude. Damn, I thought, I would have loved to chat for a bit. I had some questions about 100 Mile House she'd probably have been able to answer.

I have to remember sometimes to look out at the same time as I look in. Look past old patterns of feeling cumbersome and start new patterns of friendliness.

Friday, February 08, 2008

OK, I'll admit it. At five minutes to five, I was on the computer and checking the blog awards announcement. They'd done the awards well, I thought, by having a few awards announced each day so that the suspense was heightened. For me, my two categories were on the last two days of announcement. This was OK with me because I liked the anticipation of the announcement - in anticipation is hope. The blogosphere citizenship award came first, on Wednesday, and I got 'bronze' and was pleased to win the little 3rd place award graphic for my blog. I had to admit, though, I didn't really 'get' the citizenship award and why I'd been nominated for it. Sure I recycle, compost and vote - but none of that goes into my blog so who would know. I remembered the 'citizenship award' which was given out every year at high school and I remember that the truly cool kids would have shriveled up and died if they'd even been nominated for it. So getting third was OK.

The Activist award, though, that one I understood and that one I kinda wanted to win (are you allowed to say that?). So I was very excited at 5 minutes to 5 PST as I sat by the computer and waited to check on the site to see how I did in the voting. 3 months before this moment I'd never heard of the Canadian Blog Awards and now here I am humming the national anthem and tracing a picture of a maple leaf on the dust on my hotel room desk. Belinda and I had joked about feeling like we were sitting in an auditorium, clutching hands, with little speaches of thankyou tucked discretely away. Well I had no speech, I was in my housecoat, and I don't think there's a red carpet anywhere in 100 Mile House.

I Won! First place in the Activist Award. I grinned as I called Joe over to the computer to verify that I won. It was great. I wanted to actually give a speech that thanked everyone for voting, but more than that, I wanted to thank everyone who's ever left a comment on the blog. The comments keep me going and often are better writtten and more thoughtful than the blog written about. I wanted to thank Joe because, well, I always want to thank Joe, but particularly because he's added, 'have you written your blog?' to 'did you take your pills?' and 'have you gone to the bathroom we're about to leave'?' in his litany of morning before we go to work questions. I would have thanked Belinda for getting me started on blogging - I'd never even heard of a blog until we had tea one day and she told me about hers. I imagined an auditorium with a RAMP up to the podium and that was enough of an image to make it all worthwhile.

Later.

Joe asked if the award was the high point in my day. I had to be honest, it was up there. But 'no' it wasn't. The high point of my day was being out and about in 100 Mile House and finding people to just be friendly. I didn't get stared at in the chair, no one talked to me like a child, no one patted my head or stroked my shoulder, strangers joshed with me like they josh with out of towners, a guy asked me if I was going to do a wheelchair dance if I won the lottery (after he'd seen me buy a ticket). A whole day in a town with manners. How cool is that?

Just a little cooler than winning an activist award was being in a town without even the slightest need to be an activist - for a day.

Thursday, February 07, 2008

It was a working chair, that much was obvious. It rested against the side of a barn on a ranch somewhere between Princeton and 100 Mile House. We drove that stretch last night and were awed, constantly, by the beauty and the ruggedness of the land. The road was clear and dry but the fields were covered with snow with patches of dried, brown grass poking through. I noticed the chair because it glinted in the low dull light of early evening. As we passed I looked carefully and saw a chair, mud and straw packed on the wheels and a well worn seat and back. The wheels didn't have spokes like mine, and the seat was much smaller than mine with a cutdown back. Designed by years of use I'd guess.

I only saw it for a second when we passed, but I liked it being there. I liked it resting easy against the weathered barnboard. I liked the casualness of it's angle as it paused, waiting like a faithful dog for it's master's return. In all this ruggedness. In a land of mountain peaks and jagged rocks, in a place of desolation and coyotes, in an environment adapted by nature for no-one, it oddly, seemed right at home. I would never have imagined seeing it there, but wasn't surprised that it was. We are, after all, everywhere. A chair may simply be a devise that enables but it also, like it was now, a symbol of existance - of presence - of "I'm here now".

A few miles later on we saw a man off in the distance on horseback riding back in the direction of the barn. I couldn't help but wonder if this was the guy who owned the chair. It's impossible to ever really know, but there was little life on this stretch of road, and he was heading back twoards the chair. He wore a cowboy hat, only cowboys should wear cowboy hats, and a denim jacket with a fleece collar. And he looked free.

Even without the chair, I liked seeing him there. But I liked it more, the idea of his chair waiting to take him where his horse couldn't. I liked the sheer audacity of the idea that disability doesn't cripple. That disability doesn't shy away from land that needs to be lived with, not conquered or tamed. That limits are simply mistaken ideas.

There was a chair resting against a barn. And my mind, suddenly, was freer.

Wednesday, February 06, 2008

A funny (not ha ha funny) thing about having a blog is that you can write something in one frame of mind and read it later in another frame of mind - and go, "Oh, no, people are reading this." I hereby apologize for yesterday's blog and thank the two people who tried to make the blog relevant in their comments. When I read it again it just sounded 'whiney' and 'pouty' ... like a little kid looking for offense so he could have a tantrum.

It's true that my antennae are up when I'm in the world with and in my wheelchair at the same time. Partly that's due to having this blog and attempting to write something new every day. Partly because that's kind of who I am, I've always been alert to dangers in the world. I grew up learning that the world wasn't a safe place and to always be alive to the possiblity of hurt. Those things combined together can make me - a tad difficult and a wack oversensitive.

Sometimes it seems that I go out looking to prove my thesis: there are mean people in the world. Um, that's kinda proved every time you listen to the news. Sometimes, and this is tough to admit, I have a chip on my shoulder that someone needs to knock off. While there is prejudice in the world against people with disabilities, while there is rampant bigotry ... and those need to be pointed out. It kind of diminishes this reality when you enter the world expecting what you get, perhaps the waitress talked more with Joe than me, not because of my wheelchair, but because I was in a pissy mood. (The guy in the store has no excuse.)

So, I guess I'm saying I'll be a little more careful with the blog and on days when I feel whiney, pouty and in the mood to be a victim, I'll choose my topic more carefully.

Tuesday, February 05, 2008

We flew out to Vancouver a day early, it is our tradition when travelling to lecture in the winter to travel a day early so that should there be heavy snows in Toronto we have a day's grace to get where we need to be. The added benefit is that, as I get older, I have an additional day to adapt to the time zone change. The weather Gods were with us and we could travel unimpeded - so we had a day to enjoy the city. But from the get go, I didn't feel comfortable in my own skin, I quietly listened to what went on around me, quietly watched how people moved in the world, and I had questions ...

So, Why ...

why does the woman who serves us breakfast know so much ... like she knows ...

about Britney Spears going into hospital for psychological evaluation

about Britney's dad getting control of her money

about Heath Ledger and his relationship with an unidentifiable Olsen

about his ex wife and daughter - and how they are handling the tragedy

about Victoria Newman coming out of her coma on the Young and the Restless

about Jack and Gloria now living together

but she didn't know

how to look me in the eye when talking

how to take the order from me not Joe

how to include me in her conversation with Joe about the weather and where are we from

about how to simply treat someone in a wheelchair as a customer

And then there was the guy at the corner store, all cool and decked out in teen fashion - the right tattoos in the right places, the right piercing in the right spot ... he knew a lot too ... he knew ...

about the Giants winning the Super Bowl

about how everyone else bet on the Patriots

about how the Fiest song was lame

about Obama was WAY cooler that Clinton

about how the Canadian dollar made shopping in Seattle 'bitchin'

about how to get his girlfriend 'ready' on Valentines day ...

but he didn't know

that people could hear him when he talked

that the word 'Retard' just isn't ok to say

that name calling isn't cool it's stupid

that there was a disabled guy in the store hearing that kind of language

How come people know so much these days. So much about strangers, so much about the affairs of pop stars and a foreign nation ... but they don't know how to interact or be respectful to those who are a tad different?

Monday, February 04, 2008

"You aren't getting toast, you always order toast and you never eat it."

Tap.

"I said, 'No' forget the toast."

Tap. Tap.

"Drop it, no toast."

TAP TAP

I had to look. They were at the next table. A woman of about 20 with a much older man of about my age. He sat in a chair that looked like it was designed by NASA. A big blue seat that cradled his body. He sat upright glaring at the young woman. Beside him on a board underneath clear plastic was a communication board. He was tapping something on the board. That something, I'd guess from the conversation was, "Toast."

She was having none of it. she gave him a lecture about waste and about how he shouldn't order things that he doesn't eat. Forgive me for poking fun at a fellow porker but it looked like she should maybe pick up that habit a bit. When she finished her little speach, he simply lifted his finger in a mammoth act of will and of defiance.

TAP

I looked over at Joe who looked back at me and said, "Don't."

I didn't.

At first.

She was so angered at his defiance, she went after him with a laundry list of complaints about his behaviour and his attitude and his very being. Finally she said, "If you keep this up, there will be no television for you tonight."

He was in his 50's.

She was a kid.

Joe said, "Go."

"Excuse me, ma'am," I said, I've always loved calling the young 'ma'am' or 'sir'. She glanced up at me surprised at the intrustion. He looked over and saw that I was also in a wheelchair and smiled greeting. "If he wants fucking toast, he should be able to have toast." Forgive the foul language but I had just gotten off an airplane after a 5 hour flight, there was a 3 hour time change, and this deal about the toast symbolized everything I hate about the helper / helpee relationship.

"How dare you speak to me that way!"

"Well the whole restaurant has heard how you speak to him. Good heavens, you are arguing about toast. Toast. do you realize how ridiculous that is. Why are you making an issue about toast? Why do you even care about toast? And further, I wouldn't have said anything but the 'You won't be able to watch television' thing ... he's not a 4 year old, you're not his mother. If I get this right, and I'm guessing, you work for him. Get that YOU work for HIM."

At that there was a loud Whoop! from the guy in the chair. Everyone in the restaurant turned and smiled. They had no idea of the subject of our conversation but they saw a happy guy, a triumphant guy, in a wheelchair. She must have felt surrounded.

"Fine, if he want's toast he can have his damned toast."

"Thankyou, when you wake up in the middle of the night, you'll feel better about yourself."

He, waved me over. Carefully, he flipped the page of his communication board over to the side that simply had an alphabet.

Sunday, February 03, 2008

I didn't realize until today that I've just finished a three sixty attack on the abuse of people with disabilities. On Thursday about 50 people with disabilities came and we had a wonderful time laughing and learning together. Though the topic is serious the workshop is meant to be fun. More than half the participants came up and did a role play, answered a question, or read something from the flip chart. Everytime someone participated the audience applauded. There were two or three women and one man attending who had a real need of the workshop and were fledgling at practicing 'no'. One young woman, came and quietly told me of having talked to the police about being victimized. She wanted me to know that she had taken charge. Had told the truth. "He told me not to say anything," she said, "but sometimes you have to break the rules."

She gave me such hope. Someone who was not rule bound but someone who was a rule breaker. Someone who had taken power back. Someone who refused to live as victim. She got it.

The day before I had done a workshop for teachers at a high school about the need for abuse prevention. To teach children in their care about how to become their own first line of defense. Teachers are notoriously a difficult audience, but these teachers, a few moments in - decided to listen, to take notes and to clearly look at their students. Clearly think about what their children needed. One teacher commented on the fact that they had put in a behaviour programme to bring the classroom under control and that the programme had worked. But that he'd been thinking about the 'real world' and wondering if they indeed were teaching what their students would need to know in order to survive the real world. He understood, for the first time, that 'control' was not what victors learn, he vowed to think differently, think about what he needed to teach. He got it.

Getting up on Saturday to go do a workshop for parents takes an act of mammoth will. At that point I hadn't realized that by doing workshops for parents, for people with disabiliteis, for their teachers and care providers ... the circle could either entrap an abuser or more hopefully engender power. Parents came in slowly, sitting as couples and looking over at me, bald, fat and in a wheelchair and wondering 'oh my ... I'm giving up a Saturday morning for him.' But that passed quickly as we found ourselves talking, asking and answering questions and laughing - flat out laughing. One mother talked about the fact that she had no idea about what education her son had had about sexuality, about abuse prevention ... she hadn't asked those questions. That would change, first thing Monday. She got it.

I fell asleep in the car on the way home. As I've gotten older, I like those moments where sleep creeps up on me and takes me over. Watching television and waking to a new programme. Looking out the window at Wyebridge and waking up driving into Barrie. I like naps on days when the work has been good. Where peace has settled on me, for the moment, and I rest waiting for the next day, the next fight, the next opportuntiy.

Saturday, February 02, 2008

Hi, Gentle Readers, the Canadian Blog Awards has just announced the 'best religious blog' and Belinda won the Silver Medal! The Categories that Fat has been nominated in have not yet been announced. If you'd like drop into Whatever He Says and wish Belinda well.

The first draft was fun. The topic of two women with Down Syndrome being used as human bombs spurs me to heights of rhetoric, self righteous pontificating, even, bless my soul, finger waving. But I have a wee small voice whose sole existance is to cause me the pain of self reflection. And as a result of that pitiless voice, I've written draft after draft of this post today. What did it say? It said simply ...

HYPOCRITE

And I was angered. How could anything I have done or said compare to the travesty of what happened in Bagdad? Two innocent young women with Down Syndrome had bombs strapped to them and then were used as instruments of murder. Now I have been, on occasion, disrespectful to someone with a disability, brushed off someone who had a need to talk to me - the tiny sins of interaction. I've done those. It takes a different kind of person, a different kind of culture, to do that kind of violence towards people with disabilities.

HYPOCRITE

Oh, I think, this isn't about my little sins as a person, it's about the larger sins of our culture. And I am a member of that culture. I get what the little voice is saying. You remember when there was horror at the discovery that people with disabilties were kept in crib/cages in some European country - I don't remember which. I was horrified ... but horrified by recognition. I saw those exact crib cages used here in Canada. That they are gone now doesn't erase the fact that they were used. That Canadians with disabilities experienced such extremes in care.

HYPOCRITE

I have worked in systems, even wrote a programme for a woman with a disability to undergo behavioural shock therapy. I think it's called Faradic Stimulation. I was there when the shock stick struck her skin. You could smell the scent of burned flesh. I was there when she cried. I left when the behaviour was, not surprisingly, coming under control. This is a dark part of my past. This is a part of my past that does't make it into lectures. But it's part of my past I've ever lied about or denied. I know what I did. I know why I did it. As I get older I revisit the story to seek out new information with eyes that have learned new things.

HYPOCRITE

I mourn for those two women who were used by others, exploited. But I stand in a country where women with disabilities are exploited daily. Where crimes against men and women with disabilities are committed daily. Only miles from where I live a man in Sarnia was attacked in a park by a group of youth, they sprayed lighter fluid on him and then lit him ablaze. Lots of eye witnesses, no charges. I'm sitting by a book I just bought, Danny: The Murder of a Man With Down Syndrome - documenting the 'justice' system as it responds to those with disabilities.

HYPOCRITE

Brent Martin was beaten to death, a hideous victious attack. His death didn't make it to CNN, to the Globe and Mail in Toronto, didn't make it into public conciousness. Why? There was no perceived benefit to his death. These two women, exploited by terrorists, can now have their lives exploited by the press. The horror is doubled 'because look at what those terrorist meanies did to two women with Down Syndrome. What kind of barbarism is this?"

HYPOCRITE

Women with Down Syndrome in every country in the western world have been subject to barbarism. We've perfomed surgery against their consent to stop them from being able to have children. We've stereotyped their abilitys such that they belong to the disabled classes ... highest poverty rate, highest unemployment rate, highest abuse rate, highest rate of bullying and teasing. Yes we have much to be proud of us WESTERNERS.

So I say this ... Shut Up Voice ...

End all violence against people with disabilities. In every country, under every governement, under every God. May we in the privileged countries begin by looking carefully at our own behaviour. See the violence that is under our perview and do something about it. Can we condemn these two deaths, mourn these two women with disabilities by working doubly hard here at home to ensure that while we may not have women used in place of suicide bombers we neither have women who wish for death to escape a life of daily social torment.

Friday, February 01, 2008

Yesterday I did a workshop for people with disabilities, as part of the training I use an anti abuse film called "No How". The film, made by people with disabilities for people with disabilities, has a moment where a couple with Down Syndrome give each other a kiss. They are, at that point, talking about what disability 'doesn't mean' - it doesn't mean "I can't love my boyfriend," and it doesn't mean "I can't live in the community" and it doesn't mean "It's OK to abuse me."

There were several people with Down Syndrome attending the workshop. One young woman came out from the crowd and sat very close to the television. She was hyperalert every time either Warren or Kelly was on the screen. You knew that their Down Syndrome in some way was communicating directly to her - giving her messages far beyond the topic of the film about competence and value. Another young couple, both with Down Syndrome, radiated at the idea of being in love and having Down Syndrome - and having their affection validated.

That was all cool, but there was an older man there also with Down Syndrome who couldn't handle the kiss on screen. He covered his face and shook his head. After that moment he could no longer watch the screen. He was distracted and upset. He told me at the next break, "It's against the law for people 'like that' to kiss." He was firm. So was I. I told him that it was not against the law for two people, who love each other to kiss.

"It's against the law and it's wrong," he was firm he said and he walked away.

I don't know who put that message in him. I don't know if it was an anxious parent not knowing what else to say. I don't know if it was a controlling staff not wanting to deal with any 'of that stuff'. I don't know. But I wonder if they ever for a moment thought about what they said. About the lie they told him.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.